FIRST – REVIEW THE BASICS
The larynx is the second most common site for cancer development in the upper aerodigestive tract. Approximately 12,500 cases are diagnosed each year. Over 95% of the cancers that develop in the larynx are of the squamous cell carcinoma (SCCA) variety. Deaths from larynx cancer represent only 1% of all cancer-related deaths each year. The overall 5-year survivor rate for larynx cancer is about 68%. The most vulnerable “population” for this disease is males in their 50’s and 60’s … less than 1% of cases are in people less than 30 years old. Smoking is one causative factor – smoking 1/2 pack a day increases the likelihood of getting larynx cancer by about 4 times “normal”; smoking 2 packs a day ups your chances to about 10 times “normal”. For T1 tumors, XRT (radiation) treatment enjoys about a 90% cure rate; for T2 tumors, XRT treatment boasts about a 70% success rate. Surgery (total laryngectomy), however, for T1 and T2 tumors boasts success rates of 98% and 82% respectively. For the more advanced stages of tumors (T3 and T4), surgery is roughly 80% successful while XRT treatment is only about 50% successful. Therefore, if you have symptoms, your best hope is early diagnosis and treatment!!
Message to A New Laryngectomee, or Laryngectomee-to-be:
Despite all of the medical progress made, the word “cancer” is still pretty frightening. But having dealt with radiation and then the surgical removal of my larynx, I think that some of the most important things I would want to say to a new laryngectomee (or someone about to become a laryngectomee)are:
1.This is NOT the end of the world. Cancer of the larynx has one of the highest cure rates for any cancer. The odds are WAY in your favor that this cancer will be removed, will not return, and you will live.
2. You will almost certainly speak again, although the specific means you will use may not be known right from the beginning. One irony is that many laryngectomees can speak in several different ways. For example, before the cancer we could speak using our larynx. Now many of us have more than one way to speak such as using an artificial larynx plus one of the esophageal speech methods.
3. Not only can you survive this, you can also “thrive.” Although I certainly had fears about whether I could or not, I returned to my full-time job as a teacher, and I know lots of laryngectomees who work at jobs requiring that they speak including lawyers, preachers, auctioneers, a radio DJ, sales personnel, an active duty police officer, other teachers, musicians, etc.
4. While I certainly miss my old vocal cords I do not consider myself to be “handicapped”. I think the word”inconvenienced” sums up how I feel now. I have a few more daily maintenance jobs to add to showering, shaving and brushing my teeth; but that is basically it. I also have a couple of additional things to remember to bring with me when I leave the house besides my wallet and keys.
5. It helped me so much to talk with other laryngectomees before the surgery and afterwards. I am also so glad that there was a local laryngectomee support group I could join, and I also joined the WebWhispers Internet support group.
It is helpful to know that you are not alone, that others have faced what you are facing and can help you through it, and provide you with living examples of how you can successfully survive all of this and move on to a full life.
The Webwhispers website is crammed with helpful information for the laryngectomee and his/her family. Your community may have a local support group. Check the WW site and the International Association of Laryngectomees (theIAL.com) site to see if you have one.
6. Physical healing takes time. Healing from a laryngectomy is not measured in days or weeks, but in months and even years. So do not assume that the problems you have early on after the operation will continue. You will get better and better; but gradually. It is fairly typical to also “mourn” the loss of our voices, and it takes awhile to get over the trauma of all of this.
And mourning is perfectly ok, it is also part of the healing process. You might need some professional help to deal with the understandable depression this may cause. But do know that there is life, and a full one, on the other side of this healing process.
7.Families of those facing cancer also can suffer and require counseling help.
8.If you work and can do so, try and retain your rights to return to your job after you have healed. Many employers will be ignorant about cancer survival and assume you will not be able to do whatever the job requires. And you may be pressured to resign or retire early. If possible, avoid making any option-ending decision at a time when you are stressed and vulnerable. You may have to educate your employer on what a laryngectomee can still do.
9. Excellent information is available to you on all aspects of larynx cancer, treatments and rehabilitation at: http://www.cancer.org
I am 95% the same as before my cancer. The 5% is really no big deal now unless I focus on that instead of the 95%. Part of the healing process involves an improvement to that 5%, but also changing your focus back to what you do have and can still do. There are actually several advantages to being a lary. Just a couple are that it is now impossible for you to choke on food, or to snore, and most of us have fewer problems with allergies or colds since we no longer breathe through our noses. Since cancer kills so many people I am grateful for every day I have. I feel like I have cheated death and have been given a second chance at life, even though there was a price to pay for it. Best wishes to you. If you are fortunate, you will get the support of good professional help and other laryngectomees who have traveled the path you are on. Please feel free to ask any question you have.
And having an arm or two to grab hold of while we travel in unfamiliar territory is a big comfort. Regards, :)o
Cancer Hope Network
They match a survivor with the patient. They match as close as possible, using same sex, age, treatments, etc. Before being matched the volunteer is trained
CONTACT OTHER LARYNGECTOMEES
Contact the IAL (International Association Of Laryngectomees) or your local ACS (American Cancer Society) to put you in touch with other laryngectomees. Usually your doctor can provide you with the information on how to contact the nearest group in your area. Even if you are not normally a joiner of support groups, you should investigate your local support group for laryngectomees, often called Lost Chord or NuVoice clubs. Some of them provide free materials or can tell you where to apply for whatever equipment or rehabilitation benefits might be available in your area.. Clubs like this frequently get discounted or even free samples from suppliers. However, the most important part of going to a club is the assistance you receive from members who can answer questions, help you learn to talk and assist with other problems. You can find a listing on our site of USA clubs at https://www.theial.com/united-states-club-search . The IAL has an international list at: https://www.theial.com/international-club-search1
Join WebWhispers if you have not already become a member. Go to the upper right of the home page to join.
This site has many pages of helpful information, plus sections with Hints, Suppliers, and Humor. Laryngectomees, caretakers, and professionals can meet on an e-mail list to exchange messages, ideas and support. It is free to join and no dues to pay. We operate on donations only.
American Cancer Society (Home Page)
A current report on Laryngeal and Hypopharyngeal Cancers covering what they are, diagnoses, staging, statistics, treatments, and follow up care. There is also a section on what is new in research and treatment.
This site has all of the current information on the IAL, helpful information, plus newsletters, and local club listings. They can be accessed at theial.com
INFORMATION – EDUCATE YOURSELF
The IAL has publications that are sent out free of charge. These include:
Pocket Emergency Cards
Emergency cards are available in English and Spanish. (Send stamped self addressed envelope and specify language.)
Emergency Window Stickers
These emergency stickers can be used on automobiles or on home windows. They are available in English and Spanish. (Send stamped self addressed envelope and specify language.)
First steps is a document to help new laryngectomies to learn the basics.
Information about the IAL.
The IAL News
A newsletter that is published 3 times a year. A $5 a year donation is requested but not necessary.
Building A Successful Laryngectomee Club
Information on how to start a club or make your club successful.
Laryngectomee Visitor Program Manual
A training manual for those that want to make Pre or Post Operation visits to new laryngectomees.
Rescue Breathing for Laryngectomees and other Neck Breathers
Available in English and Spanish.
The above can be obtained from:
925B Peachtree Street. NE, Suite 316
Atlanta, GA 30309
Talking to Children about Cancer
Patient Resources Magazine is very good. The following article has some good advice about discussing cancer with children.
Call some of the laryngectomy/medical suppliers, and request their catalogs ahead of time. You may want to pre-purchase a shower collar and some stoma covers or foam filters. Find out what your doctor recommends and what he will furnish so you don’t duplicate. Most hospitals send you home with immediate needs. Look under Suppliers for a list of suppliers.
COMMUNICATION WITHOUT A VOICE
Call Inhealth Technologies at 1-800-477-5969 and ask them to send you their free Laryngectomy Needs Chart. This chart is useful during your hospital stay, as well as at home following your discharge. A dry erase marker can be used to add your own additional personal needs to it.
Obtain either a Magic Slate (one of the boards that kids write on and pull up the plastic sheet to erase) or buy a Magna Doodle, available in most toy stores. A pencil shaped magnet is used on the Magna Doodle “screen” to write. A pull knob on the bottom erases it. They come in three sizes. Get the medium or largest size. Another option is a Boogie Board. It is similar to the kids version but is electronic and erases with a button. The can be purchased off many locations including Amazon.com.
Some people recommend obtaining an Electrolarynx before surgery. Please see the Electrolarynx Hint under Post Laryngectomy section.
It is especially important if you live alone to make a recording for your answering machine. You might want to purchase an inexpensive recorder and make several, since one can be erased in error. You may also make a message for emergency needs to play after dialing 911 although you should notify 911 that a laryngectomee is going to be living at your address and they will mark your record to check any call from your house. (Katy Lyons)
Familiarize yourself with how being a laryngectomee changes your anatomy so you will understand how everything works after surgery and understand what your doctor tells you. Jot down all questions you may have for your doctors. Bring this list of questions along for appointments. Remember that no question you have is silly or unfounded. Knowledge is Power!! Get copies of your records as you go along, and keep them in a folder at home. This can save a lot of time and stress if you need them for anything later on. Please make an effort to become familiar with all the information available on our General Information page.
If you have children or grandchildren, take the time to explain to them as best you can about what is about to take place, and the changes that will occur. Young children should not be given complicated explanations. For older children, share your books and suitable videos. Let’s not forget that our children can be just as anxious and fearful as we are at this time. However, little children adapt to the new laryngectomee unbelievably fast and usually want to try out the electrolarynx. Some toddlers find toys to put up to their necks so they can pretend to talk like their loved one.